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Prostate Matters June 2021, Issue 51

New campaign launches to break down taboos around prostate cancer treatment side effects

New campaign launches to break down taboos around prostate cancer treatment side effects

http://www.pcr.org.uk/hard-things

  • Prostate cancer is the most diagnosed cancer in the UK, with 57,192 men diagnosed in 2019 —equating to 1 man every 9 minutes.[i]

 

  • New research shows 86% of men receiving treatment for prostate cancer experienced erectile dysfunction, and 79% suffered a loss of libido. However, only 1% of men surveyed felt most comfortable talking about side effects and mental health with their friends.[ii]

 

  • Prostate cancer charities encourage patients to have conversations and not to suffer in silence.

SLOUGH, UK – 26 MAY 2021 – Ipsen Ltd., in partnership with Prostate Cancer Research and Tackle Prostate Cancer, is launching a new campaign, ‘Let’s Talk About the Hard Things’ to break down the taboos surrounding the side effects of prostate cancer treatment and encourage men to talk about their experiences with friends, family and healthcare professionals.

New research, commissioned by Ipsen, surveyed over 350 men with prostate cancer and found the following:ii

  • Erectile dysfunction is one of the most common side effects, affecting 86% of men, followed by loss of libido (79%). Of those who experienced a loss of libido, almost half (42%) said their sex drive had "completely diminished" as a result.
  • Almost three quarters (73%) of those surveyed suffer with incontinence, with 61% saying it affected their quality of life. 
  • These side effects can lead to a loss of confidence and feeling emasculated, and over a quarter of men (26%) said changes associated with their physicality have directly affected their mental health.
  • Despite this, men feel uncomfortable talking about their side effects and mental health to the people they have the closest personal relationships to, with only 2% feeling most comfortable discussing the topic with family and even fewer (1%) with friends. 
  • Key reasons for avoiding conversation included: feeling others would have a lack of understanding; peer pressure to appear to have a healthy sex life and / or health in general; and feeling as though the problem is ‘left for you to sort out yourself.’

David James, Head of Patient Projects at Prostate Cancer Research, comments: “This research is an important reminder of the toll that prostate cancer can have on an individual’s physical and mental health. We want everyone to feel able to speak about the effects of their treatment without fear of judgement. We all have a part to play in normalising these discussions and banishing these taboos. It also emphasises how important ongoing research is in making vital advances in the treatment and care of prostate cancer, informed by the lived experiences of the people it affects, ensuring fewer side effects and better quality of life - it is only through research that we can achieve these goals.”

Ken Mastris, Chair at Tackle Prostate Cancer, comments: “From my own experience of living with prostate cancer, and the many conversations I have had at my support group, I know that many men undergoing treatment for prostate cancer experience unwanted side effects, which can affect their sex life and the way we feel about ourselves. These side effects can be damaging to mental health, but talking to someone – be that a partner, support group, friend, or a healthcare professional – can help to relieve some of the embarrassment and make the experience less isolating. I know I found, and many men find these conversations difficult to have, which is why this campaign aims to help break down the taboos around ‘hard topics’ and help more people open up.”

The research also found that two thirds (69%) of men feel speaking to other men living with prostate cancer, or having their friends and family understand how they feel, would help them discuss some of the ‘hard’ topics more openly.ii A new series of powerful videos, featuring a diverse range of men, has been released for the campaign launch, each showcasing a different pairing discussing their experiences of prostate cancer and the side effects of their treatment. 

Dr Hilary Jones, TV doctor, comments: “I want to reassure anyone with prostate cancer that healthcare professionals are here to help: no topic is off limits – we’ve heard it all before! Nearly one third of men (31%) surveyed said they were not confident that their healthcare professional provided enough information about the specific side effects associated with the therapy they’d been prescribed. While doctors may need to do more, I’d also encourage patients to ask questions and use the time with their consultant to find out as much as possible.”

Prostate cancer treatment can cause side effects that are embarrassing and difficult to share, but by talking with partners, family, friends and your healthcare professional, it can be easier to cope with them. Visit www.pcr.org.uk/hard-things to watch the ‘Let’s Talk About the Hard Things’ videos and find out where you can seek support.

For anyone with prostate cancer issue they’d like to talk about, contact Tackle Prostate Cancer by calling its free National Helpline on 0800 035 5302 or emailing helpline@tackleprostate.org.

Notes to editors

Additional spokespeople quotes

  • Manjinder Bains, Medical Director at Ipsen, comments "Ipsen is proud to be supporting such a pivotal and bold campaign about prostate cancer treatment. We’ve been in the field for over 30 years and are always looking for new ways to connect with and help the prostate cancer community, beyond our medicines. Last year, we worked with groups at all scales to understand the reality of living with prostate cancer and together have identified that the particular challenge of talking about taboo topics associated with side effects of treatment is one we simply can’t ignore. Working with two national support groups, Prostate Cancer Research and Tackle Prostate Cancer, we hope the message of this campaign will reach, empower and help as many patients as possible."

About ‘Let’s Talk About the Hard Things’

  • The ‘Let’s Talk About the Hard Things’ campaign is informed by findings from a survey of 361 men with prostate cancer, which was conducted between 15th February and 15th March 2021. The survey was commissioned by Ipsen, who have a medicine commercialised for men with prostate cancer. The purpose of this research was to understand and gain insight into some of the issues and ‘taboo’ topics associated with living with prostate cancer, specifically the side effects that can be caused from certain treatments, such as hormone therapy treatment.
  • Prostate cancer is the most common cancer for males in the UK. It is also the second most common cause of cancer death, accounting for 13% of all cancer deaths in males in the UK in 2018.[iii]
  • Hormone therapy is a form of treatment that targets the sex hormone testosterone. It works by either reducing the production of this hormone, or stopping the hormone from reaching cancer cells, which usually require testosterone to grow. Hormone therapy on its own won’t cure prostate cancer, but it can be used to slow the progression of the cancer and relieve any symptoms.[iv] This form of treatment can cause a range of side effects such as less desire for sex (low libido), erectile dysfunction, growth of breast tissue, loss of muscle mass, fatigue and changes in mood / behaviour.[v]
  • Radical treatments (surgery, radiotherapy) can also cause a range of side effects for men with prostate cancer. This could include, for example, incontinence, problems with sexual function following (radical prostatectomy) and problems with bowel function, fatigue and sexual function following radiotherapy or brachytherapy.iv

 

 

 

[i] Prostate Cancer UK. Prostate cancer becomes most commonly diagnosed cancer in UK, but research is at a standstill. Available here. Last accessed: May 2021.

[ii] Date on File TRI-UK-004570

[iii] Cancer Research UK. Prostate cancer statistics. Available here. Last accessed: May 2021.

[iv] NHS. Treatment for prostate cancer. Available here. Last accessed: May 2021.

[v] Cancer Research UK. What is hormone therapy? Available here. Last accessed: May 2021.

TACKLE MONTHLY BRIEFING MAY 2021

Tackle Monthly Briefing

May 2021
Welcome to our May monthly briefing. We trust you and your family are staying safe and have received your first vaccination and maybe even your second. This is the second of our new communication briefing, which we hope you will find useful; the information within it is for you, our key group contacts to use in your own newsletters and communications with your group members, and also for us to ask you for comments, thoughts, and information from time to time. We are going to press with the May issue of Prostate Matters shortly, so look out for your copy towards the end of the month
 
Helpful info and tips for you and your members 
Update on One Cancer Voice
Last month Tackle joined 46 other cancer charities to tell the governments a united message: we are ready to work with you to help plot a route out of the pandemic, and towards world leading cancer services. 
We thought you’d be interested in the summary of coverage and our next steps.
As well as Newsbeat, it has been on BBC Breakfast, BBC News Channel, Radio 4 Today news, 5 Live breakfast and drive, national AM summaries, some BBC local radio outlets, plus a written piece for BBC News online and a digital video.  It’s been covered by nationals including The Times, Mail Online, The Sun, The i, Evening Standard, The Guardian and Sky. Reach ran it across loads of their regional titles too. On twitter #OneCancerVoice reached approximately 2.87million people , so we think this demonstrates the value of collaboration  

Tackle has joined Europa Uomo and more than 290 international, national and regional cancer organisations around the globe to offer support to governments in efforts to improve the situation for cancer patients globally in the light of the COVID-19 pandemic.
In an open letter, the organisations point out that the pandemic has severely disrupted cancer detection and care services globally, with 2020 seeing a 40% drop in cancer diagnoses.

38 degree has launched a petition: ‘Tackle the cancer backlog’

We shall be running a feature on PSA testing and the importance of our continued campaign to get a national screening programme in the next Prostate Matters. But in the meantime, we have come across these articles, which you and your members may find interesting:-
PSA population screening is back in favour: here’s why
Prostate Cancer Screening and the Role of PSA: A UK Perspective


 
 
 
We need your help 
Tackle Website refresh
We are excited to announce that we have engaged a digital agency to redevelop our website. So we can build a website that meets your needs as well as ensuring we can all reach and support more people with prostate cancer it is important that we get your views. We would be  grateful if you could send this short survey out to your members.  The closing date for responses is 18th May. The link for the survey is here, and all responses will go directly to our digital agency. 

If you would like to comment or discuss any aspect of this briefing or would like more information on our new website, then please contact Sarah at sarah.gray@tackleprostate.org.


As we reported last month, Siobhán has taken over the editorship of Prostate Matters, so please do share your group news, ideas for articles as she wants to hear from you. Your feedback is vital, and we need you to tell us what’s important to you. We are always looking for case studies to help us raise awareness.  
Please email her at  editor@tackleprostate.org
 
Upcoming Events
It’s Mental Health Awareness week starting on 10th May.  The theme this year being ‘nature’   

It’s time to get walking for National Walking Month
May is National Walking Month and now the evenings are lighter for longer, this makes it the perfect time to get outside, and get walking. Walking has a whole host of different health benefits that you can use to motivate you to introduce walking into your daily lives.
 
 
 

A Note From Sarah, our National Support and Development Manager

I do hope you are all well, apologies for the lateness of this briefing, unfortunately, I had a bit of an accident jumping out of the shower, which had me laid up for a week. Slowly recovering now, but alas, I am a bit behind on tasks. As Ken said last month, this monthly briefing will change and adapt over the coming months, so please do let us know what you think, and give us suggestions for what would be useful.
At the last Support Group Leaders Network meeting, we talked about your feelings on reintroducing face to face meetings. People at the meeting discussed hybrid meetings, and from conversations I had already been having, I know that many groups can see the possibility of keeping Zoom meetings for Winter months, and also perhaps having a monthly Zoom followed by a face to face meeting. I would be really interested to hear more about your plans, what you see as opportunities, if you are encountering any issues or difficulties, and importantly what would be useful support from Tackle to help you relaunch your face to face meetings. 
Please also remember that you can access up to £500 by making an application to our Small Grant fund once every 12 months, this can help you run your groups , and can be used to purchase equipment, advertising and marketing etc. If you would like more details, get in touch with me. 
As we look to the future, we are very pleased to have started the work on refreshing our website and making more of our brand. In the conversations we have been having since I came into post, I have heard many of you tell me that it would  make it easier for you to run your groups, if you didn't have to 'reinvent the wheel' , and we could share share the great work that you are all doing, Therefore, one of the features we have asked the agency to provide for us is a new members only section. This will be a secure bit of the website for groups leads and committee members where we will keep all the assets such as templates for leaflets, posters, as well as a host of toolkits to help you do everything from reaching more diverse audiences, attracting volunteers, committee governance,  raising awareness of your groups.
To make sure this meets your needs we are really keen to involve you as much as possible in this work, so alongside the survey we have asked you to send out to your members, we are also looking for people who would like to work with us on what this might look like and we can call upon whom to test various aspects of the new website . If you are interested then please let me know. 
As always, as your federation, we are here to support you to run your groups. You can contact me on 07725 083533, or email me at sarah.gray@tackleprostate.org  

TACKLE MONTHLY BRIEFING MARCH 2021

Tackle Monthly Briefing

March 2021

 

 

 

Welcome to our very first monthly briefing newsletter. Each month we will be sending out a communication email to group leads and committee members. The purpose of this briefing will be to give information that help committee members support their members and to ask for feedback, case studies and ideas from them to campaign ensuring your voice and that of your members is front and centre of all our communications. We recognise that some of you already provide monthly updates so we hope you find this informative and you’ll be able to select from what you find relevant.
Highlights include One Cancer Voice news, Our Network Days 
Tackle’s letter in The Times calling on the treatment watchdog to reconsider its rejection of Abiraterone. Research news, recent policy developments, upcoming events, and how you can get involved in writing for our magazine Prostate Matters

 

 

Helpful info and tips for you and your members 

This month Tackle’s Chairman, Ken Mastris along with Angela Culhane, Chief Executive of Prostate Cancer UK and Professor Paul Workman, Chief Executive of the Institute of Cancer Research had a letter published in The Times calling on the treatment watchdog to reconsider its rejection of Abiraterone, a drug that could extend the lives of 2,500 men each year.

Abiraterone: prostate cancer drug should be approved, say charities
 The National Institute for Health and Care Excellence (Nice) said in January that it did not plan to authorise Abiraterone for new cases of advanced prostate cancer because it failed cost-effectiveness tests.
 
Targeted screening for prostate cancer could prevent one in six deaths and significantly reduce over-diagnosis, finds a new UCl-led study
 
One Cancer Voice
On Wednesday 16th March Tackle joined 46 other cancer charities to tell the governments a united message: we are ready to work with you to help plot a route out of the pandemic, and towards world leading cancer services. With a substantial backlog of cancer tests and treatments, getting cancer services back to pre-pandemic levels is simply not enough. In the last year we’ve seen the power Government can have. Now it’s time for Governments in all 4 nations to put people affected by cancer at the centre of their plans, plot a route out of the pandemic, and towards world leading cancer services #OneCancerVoice 
Media coverage was achieved  on the BBC and The Times, who also featured a comment piece
Please share this story if you use social media, we want to create as much noise to amplify the story
 
Orchid one of our partners created a film with our support which highlights what it is like living with prostate cancer and demonstrates the importance of people talking and sharing their experiences. Link to film.

 

 

 

 

Can you help us?

Siobhan Connor who many of you have met at our AGMs will be taking over our quarterly magazine Prostate Matters so please do share your group news, ideas for articles as she wants to hear from you.  Your feedback is vital and we need you to tell us what’s important to you. We are always looking for case studies to help us raise awareness.  Please email Siobhan:
editor@tackleprostate.org
Have you got any interesting stories to share on the below?
Can you share your experiences, tips and advice on the following?
June 8 – 14th is Carers Week 2021
we would like to hear from you about the benefits of setting up  partners and carer groups
May is National Walking Month
Looking forward, what are your plans once you can walk together?  What are the advantages of walking to men’s physical and mental health, as well as how groups enables men to talk about their feeling, issues and any problems regarding prostate cancer , through walking.
June 15 – 21th is Men's Health Week
We want to hear from you on various elements of how we stay healthy by activities such as walking, cycling etc. Mental and physical health tips, diet and nutrition.
June 1st – 7th is Volunteers' Week
You are volunteers, we want to hear from you on why you decided to get involved in an organising role as a volunteer, how has this benefitted you as how would you encourage others to take on organising roles, how do you balance your own needs as men living with Prostate Cancer and your members needs.  
Please contact: editor@tackleprostate.org
 
 

 

 

 

Upcoming Events
Tackle’s AGM will take place digitally in June. We will notify you of the date in April

 

 

A Note From Ken, your chairman

 

We hope you find this briefing useful, it will change and adapt over the coming months, please let us know what you think, any give us suggestions for what would be useful. Our aim is to support you to support your group members, so anything we can do to support you in your aims, do let us know. It was really good to see so many of you at our Network Days earlier this month. We had 98 people attend from over 60 groups. Huge thanks go to Sarah, for organising it along with Sue from PCUK. I am sure any of you who attended will agree it was an inspiring event. The videos of the event are all found below. If you plan to replay to your group/committee I would suggest you download  for better quality of sound and to reduce lagging.
 Aiden Atkins https://youtu.be/Ix8LZ0NZ44Y    Gareth https://youtu.be/Q7VBYJXDjv0
Sam Rigby https://youtu.be/Nft3wU475Bo       Mhukti https://youtu.be/OHLLRnYDic8

Sarah https://youtu.be/V52pzMsrqLg


Sarah is now looking at our next steps, and will be in touch with the next briefing on our plans.
Now, some sad news, many of you will have spoken to Simon Lanyon over the years, he has been with Tackle for the past 8 years and is stepping down today to focus on his retirement and other charitable commitments. We will be doing a feature on the amazing work he has done with us in the next Prostate Matters ,  but for now, please join with me in wishing him well. 
From now on, please direct all queries, comments and questions about any aspect of running your group to Sarah , you can contact her on 07725 083533, or email sarah.gray@tackleprostate.org  

I wish you all a Happy Easter weekend, lets hope the sun keeps shining and we are finally able to sit in our gardens with some family and friends. 

Letter from Chairman Ken Mastris

Dear friends and colleagues

I hope you and your families are all keeping well and safe. We have all gone through a difficult time in 2020 and the start of this year is showing little improvement. Last year I lost my mother, who was 100, but as the circle of life goes gained a granddaughter in November but not able to see her, we must continue to keep safe.

As a National Federation, Tackle only exists by virtue of our support groups across the country, representing some 9,000 members. Supporting people living with Prostate Cancer, raising awareness and campaigning on issues is where our focus remains as coronavirus disrupts every aspect of our lives and our community comes together remotely. In that spirit, we begin this year together apart.

I hope the vaccine will bring us to some normality so we can meet and assist our groups and families who are living with and beyond Prostate Cancer. I know that many of you have gone through hard times and my thoughts are with you all.

Last year Tackle welcomed two new Trustees, Jackie Manthorpe a nurse and Humanistic-Integrative Counsellor who has first-hand experience of being both a cancer carer and relative of someone with cancer and Roshani Perera who co-founded the healthcare consultancy, Wicked Minds  which offers strategic advice and bespoke tailored solutions to  a range of customers across  in health and social care.

From March, we will be sending out, a monthly communication email to group leads and committee members. The purpose of this briefing will be  to give information that help committee members support their members and to ask for feedback, case studies and ideas from them to campaign ensuring your voice and that of your members is front and centre of all our communications .

We have Siobhan Connor doing our PR who some of you have met at previous AGM’s. Siobhan will be taking over Prostate Matters so please do share your news, photos and stories as she wants to hear from you.

Sarah Gray our National Support and Development Manager has now been in post for four months. During her first few months, she has been learning about Tackle, has met with many of you and our partner organisations and stakeholders over Zoom and visited several groups. This learning has given her a good understanding of what you value about Tackle and how we can best improve the support given to groups so you can grow your membership. If you haven’t yet spoken with Sarah, then please get in touch with her.

We are determined to emerge from this challenge with a stronger and better federation and look forward to demonstrating this to you. I hope that you and your family remain safe and well in these difficult times.

Best regards

Ken Mastris

Chairman

 

 

State of the Art – Has the time come to introduce early detection of prostate cancer?

NICE and SMC approve Darolutamide to revolutionise the treatment of progressing prostate cancer

The National Institute for Clinical Excellence (NICE) and the Scottish medicines Commission (SMC) have both now approved the use of a new drug, Darolutamide, as an option for treating hormone-relapsed prostate cancer in adults at high risk of developing metastatic disease. This stage of the disease is variably described as:

  • Non-metastatic castrate resistant prostate cancer
  • Non-metastatic hormone resistant prostate cancer
  • Non-metastatic hormone relapsed prostate cancer
  • Biochemical recurrence of prostate cancer

Such terms can be confusing for patients.  However, the journey that many patients can relate to is:

  1. Localised disease treated with surgery or radiotherapy (or a combination of both)
  2. A subsequent rise in PSA treated successfully with hormone therapy (Androgen Deprivation Therapy - ADT)
  3. A further subsequent rise in PSA as ADT fails to work.

High-risk patients are defined by NICE as having a PSA level of 2ng/ml or more and a doubling time of less than 10 months.  It is frequently found in patients who have few physical symptoms and where, by definition, conventional scanning shows no detectable metastases. These patients will inevitably progress to the metastatic phase - often quite rapidly - when significant symptoms of bone pain or even pathological fractures will require strong analgesics and quality of life will be significantly diminished.  In this metastatic phase, both Abiraterone and Enzalutamide can be prescribed.  Neither are approved for use in the non-metastatic phase.  Chemotherapy with docetaxel could also be offered as an alternative if it is appropriate.

None of these men expect miracle cures at this non-metastatic stage of their disease, but they now have the chance of an increase in both quality and quantity of life. For them and for their families it is a major step-change in the possibilities for treatment.

Darolutamide is the first (and currently only) drug to be approved for use at this stage of prostate cancer.  The drug can not only slow the progression of their cancer but potentially also increase length of life.

For patients and for their families it is a major advance in the possibilities for treatment. By their approval of Darolutamide, NICE and SMC have acknowledged an area of great unmet need.  This joint decision enables all appropriate men within the UK to have access to this new treatment. 

Further information from Steve Allen, Tackle Patient Representative:  steve.allen@tackleprostate.org

 

Tackle demands protection for people with prostate cancer after millions have been abandoned

Tackle has joined forces with other leading cancer charities eg Cancer Research UK and Macmillan Cancer Support to write to the Prime Minister and the other heads of regional parliaments to demand protection for men with prostate cancer to ensure that diagnosis, treatment and clinical trials will not continue to be delayed by COVID-19. The full text of the letter is as follows:

"Each of your governments has committed to improving cancer survival and ensuring that everyone can still receive cancer diagnosis, treatment and care throughout the COVID-19 crisis. As we enter a second wave of the pandemic, we need you to stand by these commitments. Now is the time to back the NHS and invest in cancer care, not only to get services get back on their feet but to transform cancer care in the UK into the world leading services we all want to see.

COVID-19 has made the challenge ahead tougher. Millions were left waiting for screening and thousands went without a referral for tests. Over 30,000 fewer people started their treatment and most cancer clinical trials were paused. NHS staff have worked tirelessly to give the best care possible, and the situation is improving, but they need more support.

We must learn lessons from earlier in the year. As COVID-19 cases rise again it’s imperative that there are no further delays to essential cancer diagnosis, treatment and clinical trials. In the coming months:

  1. The public must feel confident that if they have suspected cancer symptoms, they will receive a diagnosis swiftly and safely.
  2. Health systems need to have ‘COVID-protected’ safe spaces so that cancer patients can be cared for with minimal risk of exposure to COVID-19.
  3. There must be frequent and rapid COVID-19 testing for all NHS staff in primary and secondary care.
  4. We need measures in place to maximise service capacity, including use of the independent sector where needed.

But this alone will not be enough. Cancer services need your help to address deep seated challenges. Workforce and kit shortages – particularly in diagnostics – were holding back cancer services long before the pandemic. We simply need more staff, and for them to be fully equipped.

The UK Government’s spending review is ­­­an opportunity to put your weight behind your commitments, and give the NHS what it needs to provide the best cancer care - and for the devolved governments to do the same.

People affected by cancer have already suffered terribly as a result of this pandemic. We’re asking you to act now to uphold your ambition to improve cancer survival across our four nations".

NICE approve Darolutamide to revolutionise the treatment of progressing prostate cancer

The National Institute for Clinical Excellence (NICE) has just approved the use of a new drug, Darolutamide, as an option for treating hormone-relapsed prostate cancer in adults at high risk of developing metastatic disease. This stage of the disease is variably described as:

  • Non-metastatic castrate resistant prostate cancer
  • Non-metastatic hormone resistant prostate cancer
  • Non-metastatic hormone relapsed prostate cancer
  • Biochemical recurrence of prostate cancer

Such terms can be confusing for patients.  However, the journey that many patients can relate to is:

  1. Localised disease treated with surgery or radiotherapy (or a combination of both)
  2. A subsequent rise in PSA treated successfully with hormone therapy (Androgen Deprivation Therapy - ADT)
  3. A further subsequent rise in PSA as ADT fails to work.

High risk patients are defined by NICE as having a PSA level of 2ng/ml or more and a doubling time of less than 10 months.  It is frequently found in patients who have few physical symptoms and where, by definition, conventional scanning shows no detectable metastases. These patients will inevitably progress to the metastatic phase - often quite rapidly - when significant symptoms of bone pain or even pathological fractures will require strong analgesics and quality of life will be significantly diminished.  In this metastatic phase, both Abiraterone and Enzalutamide can be prescribed.  Neither are approved for use in the non-metastatic phase.  Chemotherapy with docetaxel could also be offered as an alternative if it is appropriate.

None of these men expect miracle cures at this non-metastatic stage of their disease, but they now have the chance of an increase in both quality and quantity of life. For them and for their families it is a major step-change in the possibilities for treatment.

Darolutamide is the first (and currently only) drug to be approved for use at this stage of prostate cancer.  The drug can not only slow the progression of their cancer but potentially also increase length of life.

For patients and for their families it is a major advance in the possibilities for treatment. By their approval of Darolutamide, NICE have acknowledged an area of great unmet need.

This decision does not apply to Scotland, but the Scottish Medicines Consortium are already in the process of appraising Darolutamide for similar usage.

Further information from Steve Allen, Tackle Patient Representative:  steveallen@tackleprostate.org

Tackle Prostate Cancer Appoints Sarah Gray as National Support & Development Manager

Tackle Prostate Cancer charity, the voice of prostate cancer patients and their families in the UK is delighted to announce the appointment of Sarah Gray as its new National Support and Development Manager.

The charity has been awarded funding by the National Lottery for the project Tackling Prostate Cancer – peer-to-peer support for men with prostate cancer. Sarah will lead this 3-year project with an aim to develop and support groups across England and assist them to support their members and encourage new membership, alongside growing Tackle’s network of patient-led Prostate Cancer Support Groups by working with healthcare professionals to set up new support groups in identified areas and encourage referral for peer-to-peer support.

Working across health and social care for the majority of her career, Sarah Gray brings with her a wealth of experience of working collaboratively with stakeholders and patients to bring about effective change and service improvements for the care and support of people living with a variety of life limiting and long term conditions.  Sarah has previously worked in regional roles across the West and East Midlands for Macmillan Cancer Support, Parkinson’s UK and British Lung Foundation. With British Lung Foundation, Sarah was part of a project funded through the Health Foundation which looked at alternative models of peer support for people living with COPD. More recently, Sarah has been working with Prostate Cancer UK on scaling up and rolling out nationally an evidenced based model of supported self-management.  Sarah’s own father is living with advanced prostate cancer, so she understands the impact and consequences that treatments can often have on a man’s life.

Sarah is delighted to be working for Tackle Prostate Cancer on this 3 year funded project and said:  “I have listened to many stories from men on how valuable peer support is, and how important it is for them to have a space to learn from others in a similar situation to themselves. I am looking forward to learning from the amazing work done by the current peer support groups, and working together with them, as well as other charity partners and healthcare professionals to ensure that more men are able to tap into local support from people who understand what it is like to live with and beyond prostate cancer.”

Tackle Prostate Cancer is a patient-led charity addressing the real issues people face when they are diagnosed with prostate cancer and helping people to cope with their diagnosis and treatment. As a National Federation, Tackle has 90 support groups across the country, representing some 15,000 members. Many groups contributed to an online survey last year. The answers to which provided much of the background for the lottery application and helped towards its success.

When the lockdown period began, it was clear that Tackle’s network of face-to-face support groups would need to be put on hold. Sarah has already had success moving groups into a virtual format so Tackle can reach people in their own homes.

Sarah Gray said: “At the end of my first week, I was invited to sit in on a Zoom meeting for the Reading group. Around 35 men and some wives were online. It was a great meeting, with an inspiring clinician who gave an informative talk on Brachytherapy, lots of time to ask questions, share experiences and also time for club news including a forthcoming walk . Everyone was welcoming, relaxed and friendly. What was also interesting was that not everyone was from Reading, which got me thinking about some of the opportunities for Zoom meetings and how it can break down geographic barriers.”

 Ken Mastris Chairman of Tackle Prostate Cancer said: “On behalf of the Trustees, I am delighted to welcome Sarah Gray to Tackle. This is a great opportunity to help more men and their families feel less isolated, better supported and more empowered to navigate their cancer journey.”

Prostate cancer is now a bigger killer than breast cancer, making prostate cancer the third biggest cancer killer in the UK. Every penny raised will make a difference, lives will be saved and more people will be aware of the need to be tested.

Along with the lottery funding Tackle will also be continuing to meet its objectives of campaigning on behalf of patients and raising awareness in the community. It will also enable the ‘Save a Dad’ initiative to be followed through in secondary schools where the aim is to get a discussion on prostate cancer in the National Curriculum, just as breast cancer is included today. Working through secondary schools Tackle would like to make teenagers aware that prostate cancer will impact 1 in 8 of their dads. The charity hopes that by educating the next generation about the importance of men being tested earlier it can help “Save a Dad”.

Appeal application against NICE decision accepted

Steve Allen, Tackle Patient Representative, reports that the combined application for appeal against the NICE decision on Abiraterone made by Tackle and Prostate Cancer UK has been successful.

A submission made by Prof Nick James, a nominated clinical expert, has also been accepted.

This is merely a first step in a long process. It does in no way mean the original decision will be revoked but at least it is progress.

NICE rejects use of Abiraterone for men with newly-diagnosed metastatic prostate cancer

Tackle is extremely disappointed to report the latest decision by the National Institute for Health and Care Excellence (NICE) to reject the use of Abiraterone for men with newly-diagnosed metastatic prostate cancer in England and Wales.

Current first-line treatment for men with newly-diagnosed metastatic hormone sensitive prostate cancer (ndmhsPCa) is hormone therapy with additional chemotherapy (Docetaxel).  However there are many men who are unable to tolerate Docetaxel and, for them, there is a great unmet clinical need.  Abiraterone would have met that unmet need but this latest decision by NICE effectively prevents its use within the NHS.  For these men there is no choice: it is still hormone therapy only.

NICE do not deny that Abiraterone is at least as effective as Docetaxel when used in men with ndmhsPCa.  Their decision would appear to be have been made purely on the grounds of cost effectiveness and not on clinical effectiveness. 

This decision is directly in opposition to that made by the Scottish Medicines Commission earlier.  There is therefore now a disparity in availability of treatment depending on where in the UK the patient lives.

Tackle are already working in close collaboration with Prostate Cancer UK to lodge an appeal against this decision.  Read our Summary of the NICE decision and our Comments on it

if you are a patient who feels their treatment could be affected by this decision, then please do contact us via our patient representative:  steve.allen@tackleprostate.org 

Please note that this latest decision will not affect men who have already commenced therapy with Abiraterone instead of Docetaxel as a result of the Covid crisis.

STOP PRESS: We have started the Appeal Process - read more here.

Restarting Cancer Services in the NHS after COVID-19

COVID-19 is an unprecedented crisis which has had a profound impact on health and care services across the UK and will continue to have an impact for the months and years to come.

To guide the restoration of services, Tackle Prostate Cancer along with 24 other cancer charities have come together - as One Cancer Voice - to develop a ‘12-point plan’, supported by available data and intelligence, for what we believe the health service in England will need to do to enable cancer services to recover from the pandemic.

The plan sets out how we can deliver the cancer screening, tests and treatment that patients need.

Read the plan in detail here.

European Experts Back Prostate Cancer Screening

Tackle are at the forefront of the campaign for a targeted national screening programme for prostate cancer.

Prostate cancer  is now the most commonly diagnosed cancer in UK and the annual toll of deaths from prostate cancer continues to rise, now topping 12,000, with deaths exceeding those from breast cancer.

The European Association of Urology have now published a position paper in the journal European Urology which represents the conclusions of probably the most expert, unbiased body so far to report on Prostate Cancer Screening which comes out clearly in favour.

Read the full story here.

Tackle Trustee Roshani Perera turns the spotlight on mental health in cancer care

Tackle Trustee Roshani Perera, director of the Wicked Minds healthcare consultancy, has written an article that has been published in PharmaTimes. The article looks at the provision of psychological support services for men living with prostate cancer and their carers and families across England based on a Tackle Freedom of Information request.

Click here to read the article in full...

European Experts Advocate Population-based Screening

Tackle wholeheartedly welcomes the news that the European Association of Urology, probably the most informed and expert major international body to make a judgement, has published a clear and unequivocal recommendation in favour of population-based Prostate Specific Antigen (PSA) screening to reduce the unacceptable death rate from Prostate Cancer (PCa).

In a lengthy paper published in the journal European Urology (Eur Urol, 2019; 76: 142-150), the 12 member expert panel drawn from across Europe, including the UK, has assessed all the key evidence accrued over 30 years of PSA use for PCa screening.

In summary, the greatest benefit derives from early detection of aggressive PCa at a curable stage which comes from having a baseline PSA at age 45 to individualise a man’s future risk of developing PCa.  This should be linked to the other standard risk factors of ethnicity and a   family history of prostate cancer or breast cancer to determine the subsequent follow-up interval:  one yearly PSA for men at high risk, extending out to 8 yearly for men at lowest risk.

MRI scans and new biomarkers should be used to determine which men with a raised PSA require a prostate biopsy and, crucially, to avoid unnecessary biopsies. Men subsequently diagnosed with non-aggressive, localised PCa can be safely managed by active surveillance thus avoiding unnecessary overtreatment.

Having weighed up the pros and cons, the panel concluded that the weight of evidence now shows a clear balance in favour of screening and thus fully supports the introduction population-based  PCa screening programmes.

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